Kenny's Surgery Fund

The day my son was born he stole my heart. In my heart I knew  something was wrong when Kenny was born. Call it mother's instinct. You just have a feeling that something isn't right with your baby. He had a tumor called hemangioma. The Hemangioma (benign-abnormal growth of blood vessels) actually covered Kenny's entire left eye. They did a scan of the Hemangioma and it was Benign. He could hardly see because the tumor  was so big it was all he seen. This was very heart breaking. Kenny was sent home after 4 days and then he kept losing weight so at 6 days old he was put into the hospital for failure to thrive. There we found out a few thing's Kenny had Ankyloglossia (tongue tied) to the point he could not lift his tongue up at all. This made it very difficult for him to feed. So they put a feeding tube in his nose while in the hospital until they could find a better way of feeding Kenny. While in the hospital they found out Kenny had a severe case of Acid Reflux (gerd) and he would throw up most of what he ate.  So they started meds for that.  He started finally gaining weight and we had adjusted to a new way of feeding Kenny. We were sent home after two weeks in the hospital.  After a month of being home and several doctor appointments. Kenny would be very fussy and would cry uncontrollably. When I reported that to the doctor he checked Kenny out and he thought he had a hernia. He actually had a double hernia. They did surgery on Kenny for that at 2 months old. Around a year old they did surgery on Kenny's tongue to fix that issue. In that year we went to UVA to get help with Kenny's Hemangioma. They would not operate because of the location so each month Kenny would go down for treatments to decrease the size of the tumor. Which worked but took about three years before it was a huge noticeable difference. Kenny still has the hemangioma and it has done some damage to his vision but unless you really know Kenny you don't even notice that its there. I thought with all of that happening that Kenny was finally okay. But at four years old Kenny had a grand mal seizure and was admitted to the hospital. They did an EEG and found Kenny has some major spikes and was diagnosed with epilepsy. From the day of the first seizure  he has had them since. Some days are worse some days he is just a normal kid.  Kenny started seeing a neurologist local in Roanoke but after a year and a half of uncontrolled seizures the doctor sent us to Duke Hospital. When Kenny got to Duke he was on 8 pills a day now he is on 14 a day. He is still not even 50% controlled but better than before. Kenny has a lot of seizures mostly at night so I do miss alot which is very scary.  Some nights I can't sleep at all just thinking about the what if's. Over the last 16 months Kenny's seizure activity has gone from 70 to 91%. Which is an huge increase. That basically means he is having seizure activity (spikes) 91% of the time which can be dangerous. His mind and body never really rest.  At 80% they said Kenny needed to do infusions for six months and that meant being at Duke alot, putting kenny through a lot and missing tons of work.  The neruo doctor said he has seen in some patients the infusions helps and gets the seizure activity down. It didn't work for Kenny actually it had gone up to 91%.  Well after 5 months it has not helped so now they said it is time to try  surgery to fix the issue. After a 10 day stay,  several seizures and a few days of test they think they can pinpoint the area in Kenny's brain that is giving off the spikes. Which in Kenny's case is C4 (right side) of the brain.  Well they have to pinpoint even further by doing a surgery where they will map out his brain. He will have two surgeries the first is they will remove part of Kenny's skull and lay the electrodes directly on the brain that will monitor the activity. At this point they will not sew him back together they will simple wrap it so the chance of infection is high. So they will have him on antibiotics around the clock and will be limited on visitors. They also warned us that kenny would be in major pain after and will be out of it for a couple days just so he is comfortable. With any brain surgery there will be swelling so they also don't want Kenny to have any seixures for the first few days. If Kenny's fluid off his brain starts to drip out they will go back in and assert a tube behind his head to relieve the pressure off the brain. They will do this on August 25th. He will be admitted on August 24th. After being in the ICU for a couple of days he will be put in a monitoring room.  After about 1 1/2 to 2 weeks they should have a better idea and then will do the next surgery which is removing the area that is causing all the activity. There is a possiblity that if they move this one section he will have to learn to basically walk all over again to build up his muscle strength in rehab. We are not sure how long he will be in rehab. The hospital stay is about a month which I will be there with him and cannot work during that time so my family will be losing out of alot of our income. The doctor when he signed my FMLA papers for my job put at least three months. I will more than likely be off after he comes home or if you has to stay in rehab. We are a family of six and my husband will stay behind to take care of the other three kids. He will only come down for surgeries and weekends. We really need the help for travel, lost wages, anything else Kenny will need in the hospital and after care.  I know God will Bless us and take care of Kenny. Like he always has. God and great friends have blessed us in the past and got us through some rough times. So I know God has us now. For those of you that know Kenny you know that he is a special little guy. He really lights up a room. He always smiles and is a hugger. He is my hero he is so much stronger than I could ever be.